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Close Crohn's Disease & Ulcerative Colitis

I was diagnosed with ulcerative colitis in April 2007 - originally proctitis after having blood and mucus in my stools, and was put on a steroid enema. As a then 20 year old I couldn't deal with having to put something up my butt so I refused the treatment. My specialist then decided to put my on Dipentum (osalazine) tablets. I took these for three months before having extreme pain in my loins which ended up being my kidneys. My GP did some tests which showed I had interstitial nephritis (basically inflamed kidneys) and I was passing protein in my urine. My doctors took me off the medication and my kidney function went back to normal. A renal specialist decided it was too risky to try the other 'first line' medication for fear of my kidneys. In September 2007 I had my first major attack, a month of frequent bloody diarrhoea saw my haemoglobin drop to 70 (normal 115) and my electrolytes out of whack and inflammatory markers through the roof. I had my second colonoscopy which saw my UC to have progressed to the end of the left side. I had to have two blood transfusions before I could leave hospital after seven days. I was on IV hydrocortisone whilst in hospital and then was on high dose steroids tapering off for 2months. The steroids made me swell up like a balloon....I am a NZ 6 - 8 (US 0-2) and went to a NZ 12 -14 because of all the fluid I had taken on, I had moon face and an embarrassing hump on my neck. I was also put on azathioprine and thought that my days of attacks were over. December 07, my tummy didn't seem right but it didn't feel like my UC so I ended up in hospital for testing and they dismissed this as my UC and I was discharged. Six weeks later whilst holidaying in Thailand, that feeling turned out to be appendicitis and I had to have an emergency appendescetomy in a (modern, clean, wonderful) Thai hospital. My appendix was three times its normal size with 3/4 of it black and necrossed, hence the un-right feeling. I travelled back to Malaysia where my family were only to see my recovery get worse...my body wasn't strong enough from the past year that I the minor surgery really knocked my body around. I ended up in a Malaysian hospital with a major attack and severe dehydration. I had my third colonoscopy which saw my disease progress to pan-colitis. I was discharged on a high course of steroids. Two weeks after that course ended I had another attack, one which didn't subside after a week of high dose steroids.....my specialist was wanting me to think about surgery however fortunately my parents had heard about the drug remicade and suggested that. My specialist put me on the initial dose to see whether the azathioprine would hold. After a trip overseas and suspected food poisoning I was back in hospital (this time at home) which severe abdominal cramps (not something I had experienced before), they did my fourth (!) colonoscopy which confirmed active UC and put me on steroids, a month later I was back in hospital looking at surgery. My specialist intervened and got a dose of remicade. I have now been on remicade since september 2008 and on september 13th, 2009 I would have had one year without an attack. I can proudly say my inflammatory markers have been normal. I still have to watch what I eat and food preparation as food poisoning could be extremely serious for my UC. I have to ensure the food I eat is extremely healthy and nutrient dense as it still goes through faster than a normal person. What I can say from this experience is trust your instincts, if something doesn't feel right act fast before it gets out of control. Meditation, yoga and acupuncture have been my saviours plus the support of my family and boyfriend. This experience also showed me who my real friends were, a depressing and sobering fact as the ones I thought would be there abandoned me and didn't try to understand why I couldn't always go out and why I had to know where each and every bathroom was. I have the most amazing, supportive boyfriend one could ever ask for and the friends who stood by me and tried to understand what was going on with me are the best too. I wish everyone else the best of luck with their UC as I know it can be horrible and there are days where you don't want to do anything but roll up on the bathroom floor. Keep going, stay strong and you can control it......keeping positive really helps even though it does sound wishy washy...If you feel you are unable to adequately cope, speak to a counsellor before it gets too hard to deal with.....seeing a counsellor is the next step in my recovery as I need to move on and look towards the future before the awfulness of my past with UC catches up with me. I am happy to say I was able to finish my undergraduate degree during this challenging time of my life and was able to get good enough grades to move onto graduate studies.......having a distraction helps! :D

Treatments

Azathioprine Not Working

I was on azathioprine for one year and in that time I had three severe flare ups which almost resulted in me having to get surgery. The only thing that this gave me was continual yeast infections something which is never fun to have.

Remicade Working / Worked

I started remicade in April 2008 and did the initial course wk 0 wk 2 and wk 8 my specialist wanted to see whether the azathioprine would hold me. It didnt and I subsequently had two other flare ups which resulted in my specialists putting me back on remicade. On September 13th 2009 I would have had a year without any flare ups a date which makes me happy but scared.....my boyfriend and I are counting down the days...this treatment WORKS!

Meditation Working / Worked

This along with yoga and acupuncture really helped me deal with my emotions around my UC. It also helped with my stress something which I see as a trigger for flare ups....I am a full time student so managing my stress is very important for my gut health.